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sam’s story

a story of hope, courage and generosity

Sam had a fairly normal birth, but when he was just 11 months old, we were told he had Cerebral Palsy.


Sam is now 8 years old and up until June 2013 he was unable to walk at all.

Sam was born on August 3rd 2006, he was premature, 11 weeks early. We were told this was due to an infection he had contracted in the womb. At 3 weeks old he had a brain scan, the results showed some damage to the white matter. We were told this may or may not lead to problems with muscle movement when he's older.

For the next few months Sam thrived and we became hopeful that his rough start in life would be just that, and not develop into anything else. But around 7 months we noticed at times Sam found it difficult to hold his head up, roll over and he was very floppy when trying to sit up. He was referred to a paediatrician at 11 months old.

It was then we were told the devastating news that Sam would always have difficulty controlling the muscles in his arms and legs - or in other words that he had Cerebral Palsy.

It took us a very long time to come to terms with his condition. We found learning as much as possible about Cerebral Palsy and the therapies that may help him was the best way for us to deal with this.

As Sam grew it became apparent he was a bright, confident and happy little boy but no matter how much physiotherapy we did and how hard he tried he could not stand or even take one step. He legs were severely tight. At around 4 years old he was put on a course of Botox. The Botox is injected into the tight muscles and temporarily relaxes them. The affects only lasted a month or so and it did not give Sam any more mobility or any pain relief. So the injections were stopped.

Unfortunately at just 5 years old Sam needed major surgery on his hips. The combination of the abnormally tight muscles and lack of walking resulted in his sockets and femur developing incorrectly.  Both his hips were 70% displaced. This procedure took many months of recovery and many more to regain the strength he had built.
 

the operation

helping Sam gain more independence

Selective Dorsal Rhizotomy (SDR) is the only procedure that permanently reduces spasticity.


A small section of bone is removed from the lower spine and the sensory nerves are exposed. Each of the sensory nerves are tested to determine if they contribute to spasticity, some of the nerves are cut. This will result in improvements in sitting, crawling, standing, walking and level of comfort. The degree of the improvement depends on the severity of Cerebral Palsy and muscle strength. At St Louis Children’s Hospital, USA bone is removed from only one level of spine resulting in nearly zero risks of spine problems. where as other centres remove 5-7 levels of bone increasing the risk of future problems.

Dr Park in St Louis, Missouri pioneered SDR Over 22 years ago and has the most experience of all the surgeons performing SDR. He is selective over who will benefit from the surgery.

A little over a year after Sam's hip procedure, we heard about SDR (Selective Dorsal Rhizotomy.) After lots of research and careful consideration we decided to apply to the Children's hospital in St. louis, USA. We sent videos of Sam’s range of abilities at that time. Unfortunately, Sam was not considered a good candidate for SDR. We were advised to work on improving his strength and to reapply at a later date.   Somewhat deflated  but with a new determination we travelled to Scotland to see a highly recommended strength and conditioning coach who outlined exactly what was needed in order to get Sam to America.

A feeling of euphoria mixed with worry hit us hard 8 months later when we were accepted for SDR after the second run of videos were sent to Dr. Park at St. Louis Children’s hospital.

Due to the phenomenal support of friends, family and strangers we were able to raise the £40,000 needed to take Sam to St Louis. In late May of 2013 we went to America. The surgery went well and after only 5 days Sam was sitting up although incredibly weak. On the 7th day, being fully supported he took his first steps. To see and feel his legs move and be so relaxed was utterly amazing and so emotional. We knew this was the start of a new life for Sam and for us but also the start of intensive physiotherapy and strength building for many years to come so he could reach his full potential.

Dr. Park recommended “intense walking” and fortunately Sam’s spirited determination has got him to a point where, after much practice and continued physiotherapy, he, with the aid of a frame, walks.
 

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please help us raise funds to help support Sam in to the future
When considering the surgery, it is crucial to take in to account the aftercare. Immediately after surgery Sam did a 3 week intensive physio programme in the States, once home we were entitled to NHS physio once a week for 6 weeks. This alone is not nearly enough to get the maximum benefit from the surgery for Sam.

Every week he does a mix of home therapy, private physiotherapy, personal training, swimming and horse riding. There is no time scale to say when Sam has reached his full potential. He can keep improving if he keeps working on various strength and condition activities. Really, this is a way of life for Sam. All of the additional therapies, activities and equipment require additional costs to the surgery. We are so very grateful and overwhelmed by the help and support we have received.
 
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events

fundraising events near you

Portsmouth Beer Festival

 
There will be a games room with Enormous Old traditional pub games. All money raised from the games room is divided between Samuelsfund and the Rowins Hospice
portsmouthbeerfestival.wordpress.com/charity/


portsmouth-beer-festival

 

A Touch of Magic


A Touch Of Magic is a small local charity run by Jess and her family.
Jess is 14 years old and an avid fundraiser for charities. Fortunately for us, A Touch of Magic have chosen to support Tree of Hope and Samuelsfund. 50% of the final total will go to Sam.

They will be holding many events through out the year.

They have set a target £5,000.


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A-Touch-of-Magic

   

Available now...
Christmas single and video starring Sam and friends!


The video is available to download from Monday 15th Dec.
CDs are available now for just £3.

Email me at ldeaks@hotmail.com or message me via Sam's Facebook SAMUELSFUND to order.

All money raised will go towards Sam's therapies.

Samuels Fund YouTube

   

The Southsea Alternative Choir raise more funds for Samuels Fund!



» Friday night at the RMA: This gig has sold out. Doors open at 7:30pm.

» Saturday night at the King St Tavern in Southsea. There are no advance tickets for this gig; admission is by making a donation to the charity on the door. Doors open at 8:30pm.

Everything we do at Christmas is for charity, and we really appreciate your support. It's going to be a fun weekend.

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blog

read about what's been happening
  • 18 months post SDR

    December 04, 2014
    It is now 18 months since Sam had the Selective Dorsal Rhizotomy (SDR) surgery in America. In some ways the time has ...
    READ MORE

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